Dear Diagnosis: Stephen’s Letter to Himself

Hello Stephen… it’s me, Stephen. 21 years later. Now that some time has passed, I thought it would be cool to send a letter back into the time machine. I hope this note helps you navigate the next couple of decades.

When you were diagnosed, you were told that you would need to give yourself 2 injections per day, every day, for the rest of your life. That must have seemed overwhelming. I remember you did the math in your head right away: twice per day, 365 days a year, equals 730 injections per year! That’s 7,304 every decade.

Now, this may sound like lame advice, but hear me out. Today, when I start to feel overwhelmed, I try to break things down into small steps. I try to keep the overwhelming from becoming overbearing by doing what I can do now. My point is that diabetes is a one-day-at-a-time disease anyway. And each day builds upon the next to determine how you’re doing in the future. While that may seem daunting, you can still only live this thing one day at a time.

So don’t worry about tomorrow or yesterday. Your best chance to live well with diabetes is today. Tomorrow, repeat those last two sentences to yourself. Rinse. Repeat. At some point, sooner than you think, you’ll feel less overwhelmed.

When it comes to diabetes-related supplies, remember: You’re the customer and the supplies are products. Whenever possible, take things out for a test drive, so to speak. Find out what works best for you. How to start? Seek out answers from others. In person at first. Later on, you’ll discover this diabetes online community thing where you’ll be able to get firsthand accounts from people using all sorts of things you haven’t even heard of yet. Use their (our) expertise to help you make an informed choice.

When a doctor wants you to take a new drug or do something new, ask them why. If they can’t give you a credible answer, you might want to consider waiting to fill that prescription or start that new program until you find out more. And if you do take their direction, try to find a measurable way to gauge whether you see an improvement. If a new drug or new program doesn’t help you improve your A1c, or your cholesterol, or your blood pressure, don’t be afraid to tell the doctor that you won’t do that anymore. And tell them why.

If you take this advice, you might be able to avoid a certain ugly episode with a doctor that sees you as a paycheck rather than a patient. It’s okay for doctors to make lots of money. It’s not okay for them to treat you like crap, then expect to be paid. Trust me, you don’t want to know any more about it than that.

Let’s talk about burnout. I’m not sure how to break this to you, but if you’re feeling diabetes burnout at some point, you’ll be in a select group that includes about 99.5% of all people with diabetes (PWDs). And the other half percent is lying. In other words, you won’t be alone.

If this happens in about 10-15 years or so, you’ll be able to find hundreds of resources online. This will probably be a time when you’ll need less advice and more support. A shoulder to lean on. So use this diabetes online community I mentioned before to seek out that support. They’re very, very good at it. It’s hard having to do this every day. And it sucks. So when you’re feeling burned out, use this resource to help prop you up. Then do the same for someone else who needs a boost.

I know that in the next 20 years or so, this diabetes thing will make you worry occasionally. You’ll get mad from time to time. You’re going to feel guilty because you can’t find all the answers yet or because someone else is suffering more than you. There are going to be times when you’ll wonder if you’ll ever figure it out.

Those things come with the territory. But they will make you stronger, even though it won’t feel like it at the time. Let’s talk about those another time. For now, remember: one day at a time; make the best decisions for your care and don’t be afraid to ask questions; and seek out help when you need it. That’s enough for now. Keep doing your best. And don’t forget to think of others and help them whenever you can. I’ll be in touch… back in the future.

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What do you know now that you wish you knew then? Send your “Dear Diagnosis” letter (and photo) to editor@diabetesdaily.com and we might share it!

Stephen has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium, and since then, has covered a number of diabetes-related subjects. In November 2013 Stephen began awarding medals to people living with diabetes who achieve their athletic goals. In November 2014, he spoke before the U.S. Food and Drug Administration during a public workshop on interoperability between diabetes devices. He is a part time moderator of the popular weekly DSMA Twitter chats, and encourages others by staying true to the phrase, “I support you…no conditions."